Sunday, October 29, 2006
The world that I am now in is the same one I’ve been for the past three years. The only difference is that now I have come back to part of the world or rather regained a chance to explore the same world from another sense.
I guess that amongst the questions that I’m finding myself asking is why did this happen now… and to me. For in truth, my life as a blind wheelchair user was slowly becoming meaningful and significant. But to me. In many ways, I feel that this experience has taught me many things about myself. And about others.
I am still blind in one eye and remain a wheelchair user, so I expect that disability remains with me at least until the society that surrounds me acknowledge the value of difference. For even if there is a ‘radical’ shift in my vision (physically speaking), the barriers that I find on a daily basis still remain.
I wake up to the same world. A world that still values perfection in terms that are clinical and physiological. A world that pathologises and mythologizes people with impairments robbing them of their humanity. And I’m not just talking about our right to be regarded human beings, but the right to involve ourselves in the world around us.
The operation has offered me the chance to see again. But it’s not the complete solution to my problems. Or the problems of others. Indeed, the fact remains that my life would be better off if people did not continually have to talk about me as if I were the problem.
For we have the means to make life easier for everyone. We should be technologically advanced, shouldn’t we? But why does society strive on to seek a ‘cure’ or a short-term solution to the problem when the means to include all of us is there and available. I’m not sure about the answer to that. But I think it has much to do with our obsession with an illusion we call ‘physical perfection’.
I don’t want to live in a society that accepts me as long as I’m able to adapt or fit its structural setup. I want to live in a society that accepts me when I am much older. A society that gives a fair chance to every individual irrespective of any prejudices it might have against that person. And it’s not just a change of eyes that is required, but a change of minds…
Thursday, October 26, 2006
Almost a week has passed since I regained vision in my right eye. After recovering from the shock of watching my changed self in the mirror I now am slowly settling down in the world of the ‘sighted’. It’s surprising and unreal to find yourself back into a world that you once knew existed but being so far detached from.
It’s really like waking up from a long dream and realizing that you have got to start all over again. I admit that I have had times when I just close my eyes to do something because not only do I do it faster but also without much effort.
I can say that there are many things that I’m doing right now that I have missed doing. Such as looking at old photos and even watching some TV. And if you’re wondering, there were disappointments and surprises as I journey on this new life.
I am not sure whether this will last or not… perhaps I’m dreaming or something. Or perhaps I died? Seriously now, being able to see puts things into perspective.
For starters, it sets you thinking about the fragility of our existence. A single event, or shift in perspective can have enormous effects on our lives.
However, The greatest lesson I have learned so far is that much of the world that we take to be real has much to do with our own view of the world. I have stepped into a different reality, yes, but this reality has brought me more to understand who I am as a human being.
It’s not just a matter of appreciating the ‘gift’ of sight, but it’s really recognizing that our position in the world is often conditioned by what we deem to be a better or greater position. But is it really?
I know that I’m living in a body that is constantly changing. But the question remains nagging at the back of my mind, why is it so hard to adjust to this world of the ‘sighted’?
I was telling Charles, a blind friend of mine, how sometimes I need to shut out the dazzling world to do some things. Yes, that may be habit and a way to rest my eyes. But in truth it also means that seeing is not simply confined to the senses.
Nobody sees though his or her eyes really. I think that we experience reality through our eyes, but that’s not the whole picture. I could compare sight to a note on a musical staff, it may enrich some pieces, but it’s not the ultimate and only note to make a musical piece complete. For the reality is that what we have built, what I have built, is in the mind. And even if I can appreciate some forms of beauty now I missed before, there are different levels and conceptions of beauty. Different steps or ramps of perfection.
Tuesday, October 24, 2006
Since I have regained vision in my right eye, I realize that I’m changing considerably. It’s funny when I write about it but I feel that part of me has died, or rather slowly dying. And it’s hard for many people to understand that being blind is not the end of the world. At least, it wasn’t for me. There is of course a considerable period of recovery since I am overwhelmed by the world of lights I see around me.
Believe me, I sometimes wonder whether this is a dream after all… and I wake up to the life I had built for these past three years. And no, I am in no position to make value judgments or answer questions such as:
Aren’t you better now that you can see?
Unfortunately, I got this question thrown at me over and over again. As well as to recount my whole experience before and after surgery. But the answer to the question of whether my life is better or not now that I can see from one eye is prejudicial. Why?
A common mistake that people make is to associate blindness with the worst of things that can happen to you. Indeed, historically blindness was associated with sin or ill doing. And then again, I’m told that an advertising campaign against cigarette smoking have included the warning that smoking can kill or cause blindness.
No, I’m not saying that everyone should stop taking medications or start smoking. I’m saying that the value of blind people must go beyond the simple recognition that they cannot see. Or that there life is miserable. I even hate speaking of ‘us’ and ‘them’ here, as it seems that I’m am now setting myself apart.
I feel that I cannot even speak of a better life after having major eye surgery to rectify my situation. The idea that we still speak of the value of diversity and then in our hearts believe that being blind is tragic smacks of hypocrisy to me!
I have been blind, but now I can see. The happiness of my life, or the choices are make from now on are a different matter. But one crucial factor that can make a difference in the range of choices I can make does not depend on my range of vision or movement. Sorry to disappoint you rehab folk…
A society that still regards blindness and physical/sensory/intellectual impairments as individual problems … … implies that society has no option but to believe impairment to be a tragic ‘affliction’. And then you have all the things that seemingly enforce this verdict on our life.
When people say that my life should be better now that I can see, it only means that they thought my life, as a blind person was not. And with the same logic, my life as a wheelchair user now is in many people’s minds a source of unhappiness that remains to this day.
But still you ask me whether my three years of living in a world of lights and shadows was really a waste of life… was if I had to describe my life …
My life as a blind person was really fine…
I rather think that it’s society that needs to do some serious re-thinking about people with impairments. I remain a wheelchair user. But I was proud to be blind. And I am proud to have been welcomed and included in the local blind community.
Stating otherwise would not only be false but would mean that I am as disablist as others who judge me by my impairment,
Sunday, October 22, 2006
I've just come back after having undergone major eye surgery to my right eye (my only remaining 'good' eye) which was a complete success. Now I can see again and read for a few minutes. However, I feel that relearning to see after three years of being legally blind is not an easy task. I will have to deal with more and more visual information that I had forgotten existed.
However, I will not be talking about these things today. I will be talking about the importance of value and difference. It would be the act of a coward to put my past as a blind person under the carpet. I mean the frustration of not being able to exert my freedom and choices. True, I still remain physically impaired, and blind in one eye. But then what?
As a disability activist, I feel that I cannot truly say that my blindness or lack of mobility was ever the problem. But in a society that sees us through the lenses of hospital visitors, we may come across as pathetic and sad. And although there may be times when we had a bad day, it's not the whole story.
Yet, for people our reality remains unnatural and asocial. I don't like it when they say that the life of a person who cannot hear, cannot see, cannot walk or takes longer to understand is a sad one. Or even a waste of life or as the Nazis put 'lives not worth living'.
That said, my life will surely change now. But I want the blind friends I made to remain there. To remind me how society negates their existence by not accounting for them. And by both being very compassionate and yet denying their and our value as people.
There's a lot that is passing through my mind right now. But I think that we should start discovering that our life is not something that can be modeled on a fancy idea called perfection. Our life is of value and has value in society. But unless the structures change, it's doubtful people will change. For where will they see us most often? In hospital, for example, when we're at our worst form.
On that note, I close and rest a bit as tomorrow should be another long day. No, I'm not going off to sleep just yet but I need a rest for sure.
Wednesday, October 18, 2006
Sometimes there are times when you know something is due to happen but when it comes you are taken in by surprise. This morning, for example, seemed to be just like any other Wednesday. Until I was informed that I’ll be admitted for surgery this Friday… a great way to prepare for the weekend right…
I can’t say I’m not worried because this eye operation has been on the back of my mind for a long time. But now that it’s here … well I am unsure of what will happen. All I can say that it’s improbable that you’ll read any blog entries for the coming weekend.
Will I survive the hands of surgeons at the ophthalmic department? Will I get out of it unscarred? These are indeed compelling questions.
KEEP CHECKING THIS SPACE
Sunday, October 15, 2006
THOU ART RIGHT IS (PART 3)
As I went on writing additional parts to this post after being inspired by a medical symposium last Thursday , I was naturally exposed (intentionally or otherwise) to different ideas and experiences that set me thinking further on the way people view my impairments…
And funnily enough one story that popped up in my mind was none other than the Hans Christian Andersen story called “The Ugly Duckling”. Right, you say… is this going to become a blog where we must get our handkerchief or tissues ready for intensive use?
I can reassure you that the answer is NO! But it’s surprising how this tale touches on the points that I’ve been making on impairment and how it’s often viewed.
The main lesson children learn from this fable (to unlearn it later) is that being different doesn’t make you bad or ‘uglier’ or inferior to others. In fact, your difference should be something to be proud of as it is what makes you unique and in fact who you are. But what happened to the ‘ugly duckling’?
The alleged duckling was simply ostracised by his ‘community’, rejected even by his mother and siblings. Not only that but everywhere he went, he was considered a misfit or as not really someone of true value.
In reality, this is not that dissimilar to what happens when there is a child with an impairment in the family. Whether it be a label of ‘special’ or ‘faulty’, the child is almost always regarded as an outsider to the rest of the family. However, the exclusion of our swan-t-be doesn’t end there…
After he desperately escapes from his community, he ends up in the real world. There too, he is considered to be ‘ugly’ and of less value, or even useless. Whilst in refuge in a house, one of the resident animals (who was sharing with a hen) warned him that if he didn’t learn to purr like himself or start laying eggs like his hen friend, he should start packing. A very warm welcome indeed! But if you compare this to the voice of society when it comes to welcoming a disabled… the similarity is indeed startling
I remember as a child, the many times I have been told that if I couldn’t walk or see as well as others than that was my problem… and walking or now seeing should be my sole reason for being …
Indeed, I did want to be a duck when I was young... err... I meant I wanted to be ‘normal’ (whatever that means) … but now I think that my impairment is something that I shouldn’t be ashamed of. In fact, I have always felt an ‘ugly duckling’ among people who have always told me that I should be quite depressed or unfortunate for not being a ‘duck’ like them… err... I did it again, didn’t I? I meant non-disabled like them.
Jokes apart, I’ve been trying to convey a clear message here. Not that there should be friendly terms between species… but that non-disabled people who have lived apart from us for so long still lump us under one label. Or else make us feel inferior for being who we are.
I clearly remember how once a doctor told a family member whether there was a possibility of ‘fixing my legs’, by this he meant surgery. I was 9 at the time. But the implication was clear. I was loved, yes, but I would be even more loved if I was like the others. That is the ‘walkers’ …
Don’t get me wrong here. I have nothing against non-disabled people… However, there’s always one or two who think that my position in life just because I have impairments is of less importance or that I should hide away somewhere where they can’t see me. The truth?
I want to be respected by non-disabled and disabled people on my own terms. Not by any funny ideas they may have about me but by who I am… And here I discover the swan within …
For despite trying to ‘fit in’… and believe me I’ve tried lots of things… I realised that I couldn’t change my physiology... and why should I? At that, should I then even change my name to reflect how people view me? Wouldn’t be pretty impressive if I could list all my ‘conditions’ behind my surname? Wouldn’t D.M. (my type of arthritis), C.P. (cerebral palsy) and V. I. (visual impairment) look impressive in my future publications (fingers crossed)?
The answer is an emphatic NO even if it were possible to add those titles. People have for long hurt me by discussing me as if I was a variable in the environment or a case study... And this is perhaps why I used the ambiguous title for my post…
The post’s title can be read as meaning “Thou arthritis…”, that is: “You arthritis…” meaning that I suddenly become patient G suffering from condition 123a, please refer to the medical blah blah or really as me suddenly becoming my impairment!
However on close examination, there are actually four words not two and they are:
THOU ART RIGHT IS
Or YOUR RIGHT OF BEING IS THIS…
This is perhaps a more realistic statement of what I encounter on a daily basis: An imposition limited by how I am viewed by a particular society. But would do I want?
I want to be valued as a whole … As a person and as a human being.
And this is not simply a matter of placing me into society as you would a tree or sign post. But rather ensuring that I am given space to express who I am, voice my opinions and make my own choices. Ever tried inserting a square block into a round one? Frustrating! Besides, it’s impossible … unless there are also square holes to accommodate the ‘square’ blocks. I’m not saying that we are squares or circles, or even ducks and swans. I am saying that many only see us for our impairment without stopping to think that there may be other ways of being.
Different, yes, but equally valid. Equally human. Entitled to expressing who we are in every sphere of life we can!
END OF SERIES
Saturday, October 14, 2006
There are of course many dangers into turning my life into medical history. The greatest danger, however, remains when it comes to discussing our rights as persons. If we are regarded as ‘medical problems’, it’s not hard to see how the myth of:
Once you’ve seen one, you know them all
Persistently resurfaces in a discussion about disabled people. Instead of seeking ways to get to know us, people often focus solely on your impairment.
Imagine me entering a room…
“So you use a wheelchair?”
I nod. Then for a complete stranger, choose from:
“Where you born that way?” or
“What’s your condition?” or even,
“I’ve often worked with people like you…”
The last one happened to me very recently. There are many reasons for this interest in our impairments but it may be because people think that:
Impairment defines character.
Wait there, you’re constantly speaking of disability here, so there is something that links you people with impairments all together isn’t there?
Yes, we speak of a common heritage as disabled people. This heritage reflects a history that has constantly defined us in terms of our impairments. Thus, we are victims of pathology, curse or tragedy. In short, we were always regarded as not quite of this world:
So, we have been described as:
OBJECTS OF RIDICULE
EMBODIMENT OF EVIL
POLLUTANTS TO THE MASTER RACE
LIVES NOT WORTH LIVING
DIVINE CREATURES OR SUPERNATURAL BEINGS
OBJECTS OF CHARITY AND RELIGIOUS DEVOTION
I’d better stop there for I’ll really start to wear myself out. But how can we be all of these things at once? The answer is simple.
Until the past 40 years, disabled people have not been describing their experience but it was always the other, be it the priest or medical examiner here, who defined who we are and our purpose in life. And even if I try to be myself, I cannot avoid being just another ‘brick in the wall’ to quote Pink Floyd for strangers and the general public.
And giving us our rightful recognition goes beyond treating us with dignity or care. It means admitting that as humans we are:
Other than being simply MEDICAL or SPIRITUAL entities. The point is that too many think that simply giving me a life is enough. For what is life outside society or the community? But yet, this same society should go even further still.
And I’ll leave you with this for today:
How can I be myself if when I speak I’ll be judged in terms of my impairments and what they are perceived as being? Will I be considered part of the community or part of the environment? And that to me would be a significant difference!
TO BE CONTINUED…
Friday, October 13, 2006
Yesterday I was invited to a medical symposium on arthritis, one of the conditions that ‘afflict’ millions of ‘sufferers’ around the world. Wait there … I have arthritis myself so I’d better rephrase that last one for my sake at least … here it goes again:
I have arthritis, yes, and a particular form of arthritis from the many hundreds that exist. It’s called Dermatomyositis or DM for short. A name that on my speech synthesizer has the habit of being interpreted as the old German currency (Deutsche Mark) now obsolete. When it’s active, it can be painful but then again it can be controlled. Added to that, I was born with cerebral palsy which has affected my mobility since childhood. A bonus to all of that is a visual impairment as a side effect of medication for my DM. That’s what you get when you invest in discontinued currency right?
Why am I joking? This is serious stuff I have to say… isn’t it? Yes, living with arthritis and my other impairments has its difficulties and I admit that the doctors I have worked with have been of great assistance in providing me with adequate counsel and support. But as I read on about arthritis for my reference, I cannot but frown and get rather, err, sick… because if I take a peak at medical texts with their accounts of how my life should be there’s nothing that would give a prospective client receiving the news that he or she has arthritis the motivation to get out of bed.
True, science and particularly medicine has the duty to improve health and perhaps prolong life. But that doesn’t mean that the medical history that you find scattered all over the net should enlighten you into what living with arthritis means. And I don’t say that I ‘suffer’ from ‘arthritis’. Because I don’t … I have occasions when I do suffer pain but I don’t regard myself as a ‘sufferer’ or an ‘afflicted’ human being!
If you consider medical texts who speak in terms of our ‘suffering’ and ‘afflictions’, or the ‘burden’ of having arthritis, you may understand how dehumanizing such discourse is. And they won’t be talking about an art work here but you, and me!
To be honest, I had a bitter experience recently and I am still shocked by it. Once I went into more detail about my impairments, in this person’s head I suddenly became part of the notorious category of ‘the disabled’ (quoted directly). Which wouldn’t be that bad if being disabled didn’t mean to society as being:
A bunch of people who are faulty and generally uninteresting.
All the same, character dependent on impairment.
To be tolerated not included.
And when do you get disabled people on the media usually? To raise funds for charity or to make people feel happier about themselves… whilst businesses often become sudden benefactors. Not that those funds are not needed but they are needed most often because society has failed us big time! And yet people apparently want to consume this view of disabled people as a social burden, all happy and friendly, or like children…
Whilst thinking of us as an epitome of imperfection, they expect us to be perfect in our attitude to life and in our performance.
If that’s what people want then why argue? The whole issue is that it’s not only a disservice to disabled people to promote such negative or pathetic images of themselves, but it sends out a conflicting message to many.
For how can I be part of society if this same society regards me as a burden? How can I speak of my life without referring to my impairment if society strives to limit who I am by using it as an excuse? Why is my health such an important issue to government, whilst my civil liberties are not? Is not this a travesty of social justice?
TO BE CONTINUED …
Wednesday, October 11, 2006
I’ve often thought of people’s reaction to the claim that one can be proud to be disabled. Not only do people see this as a contradiction in terms but they tend to label you an extremist.
As a young boy, I was taught to ‘accept’ my impairment. But acceptance doesn’t mean that it’s a good thing to be impaired. On the contrary, it usually implies that you must accept your ‘loss’ or status of inferiority and dependence for good. I cannot accept that for sure. At least not any more.
When I state that I’m proud to be disabled I’m stating a politically charged assertion. Indeed, I put into question the very idea that persons who have no impairments are better than myself. I’m not saying that they’re worse off either but that our difference doesn’t necessarily imply social deviance or even evil.
Sure, we hear that disabled people are loved and should be accepted. In the same instance, we are bombarded with regimes that gear towards rehabilitation and also when all else fails, promise of a miracle cure. This can be both a well marketed medical research programme and even a visit to some holy shrine.
In all cases, however, ‘the message is that impairment’ is bad and preferably avoided. No wonder when I had been interviewed for a local newspaper I was described as a youth ‘fighting on in spite of my impairment’. But I encourage you to put into question this very fact…
I believe that impairment is not the cause of the restrictions I face on a daily basis. Granted, sometimes my impairments do give me problems but I don’t call the mayor to intervene when this happens. Like everybody else, I go to the doctor. But then there are choices that I could make if society recognised me as part of it. Taking me into account involves Things like simply ensuring that a meeting is held in an accessible venue, especially when it’s a public meeting. Or putting accessibility into building plans. Or even ensuring that there’s a solid investment in information communication technology in public places. But then I’ve heard non-disabled people speaking of themselves ...pleading their case … I sometimes forget things, or I once broke my leg, or even still I cannot eat certain foods as I’m allergic to them. That makes me disabled, right?
Wrong! Whilst some of you may encounter a mishap or need to watch what you eat, in your daily life, the restriction that people with impairments like myself encounter are constant. I’ve outlined some of these obstacles in earlier blogs, but suffice it to say that the cultural bias that pervades kills the very possibility of thinking of your impairment as a part of you.
So, we have even disabled people themselves wanting to be err... something they cannot be. And unfortunately yet, this ‘hope’ or ‘expectation’ is reinforced all over again by media journalists. We read titles such as:
BRAVE YOUNG MAN SUCCEEDS DESPITE HIS MULTIPLE IMPAIRMENTS
In a short heading, the fact that one is impaired becomes the ‘challenge’. Or something bad that I must fight against. Great! What this basically means then is that of my body about 30 percent is junk. Of course, they won’t say that out loud but what do terms like ‘dysfunctional’, ‘deformed’ or ‘cripple’ actually imply? Not very nice adjectives if you ask me.
But in truth, why cannot people understand that living with impairment wouldn’t be that bad if society accounted for us. Imagine, there’s everywhere accessible, no longer periods staring at the computer screen if you just wanted to listen to a document, no more crammed toilets, no more searching for a suitable pavement for your pram, no more taxes. Ok, the last one is a bit impossible. But you get the picture…
I am who I am because of my impairments, not in spite of them. People who think otherwise do not know anything about me. Undeniably, it gets difficult if society keeps insisting that I should be happy with whatever I am given. Until they find a way to fix me or get rid of me… Where is the fairness here? Is this justice to assume my life is worthless? Is it even true to state that my life would have been better off without my impairments? Who would I be anyway?
If we believe that racism, sexism, homophobia, xenophobia, etc. etc. are wrong, why do we take it for granted that people with impairments are the weaker members of the community? Or that we are less fortunate? A common error that people make is that they think that my impairments are my problems. Bad luck, isn’t it? And even there, what is the problem with my impairments? Are they really the problem? Why is it then so easy for me to navigate and get around at home or the office and it’s hell when I try some other place? Have I changed bodies? The only difference between here and there is that where I live I have an environment that welcomes me whilst in some other place; wheelchair users are just not welcome.
Now call me any name you want, I am proud to be disabled. My impairments are part of me. Denying them would be denying part of me. And that would really be a pity ... take my word for it!
MORE ON DISABILITY PRIDE
Monday, October 09, 2006
I am not about to embark on a sentimental journey opening the doors to my past or anything that is of no concern to the general public. Instead, I’m going to make a point here that might come as a surprise to some people. The fact is that like any other human being, I sometimes wonder about love and whether I’ll find someone that shares this love. It doesn’t really deserve the title of ‘revelation’ but it’s surprising how many people who have never met disabled people regard us as beings that are almost outside the realm of humankind.
I may blame the many fairytales here which have helped to propagate the myth of our ‘alien’ or fairy-like qualities. Elves, dwarves, creatures with weird bodies, blind seers, mutants, evil witches, hunchbacks, goblins, etc. etc.
I can go on and on. But never do we really encounter a person who has an impairment becoming the main protagonist. The hero… or even the Prince or princess in any fairytale or story. And when there is hope for the ‘beast’ to marry his ‘beauty’… what? Yes, magic! The beast cannot remain a beastly creature but is redeemed and now can become a beautiful prince. Very moving, but it doesn’t help my quest for love a single bit. (No I won’t consider major surgery thanks very much!)
I’m tempted to write a story in which it wouldn’t really matter if you were just different from the rest. In which the heroes and heroines do not come out of a dreamlike world that does not really exist but are ordinary decent folk. In which the evil may or may not be beautiful and charming. In which having an impairment didn’t mean that a spell has been cast on you and once you prove yourself (usually you’re rewarded for being a good boy or girl) you become well, perfect …
… And I’d call it a happy ending if it weren’t for the fact that year after year the story inadvertently repeats itself. The image of evil and wickedness is the ‘deformed crippled’ creature who spends his or her time planning the destruction of the beautiful world of the others. And aside from sexist tendencies in these fairytales, I can only cringe when and if a 4 year old asks me whether an evil witch cast me a spell.
Perhaps a witch did cast that spell, but not on me on the world around me. But that’s another matter. Quite spooky but too real I’m afraid! But to back my attempt at finding well, love …
The verses I write in the privacy of my own home … my essential feelings of attraction and of fondness … and my quest for love that has been at the core of human passion for centuries … all this means something for sure doesn’t it? And yet the myth persists that if you’re a wheelchair user you shouldn’t think of such things or I’ve even heard people say that blind people cannot love because they cannot see. Or that when there are differences in communication love is not possible. And perhaps most shocking … that love requires a degree of intelligence. So people with intellectual impairments are cast off as angels or eternal children.
These all myths and dangerous spells that are not the creation of a wicked witch residing in an inaccessible abode (unless she’s not society living in the world). These spells are the thoughts and prejudices that kill the very heart of our humanity by denying us one of the greatest rights of being. The right to be considered loving human beings. Not shadows of our friends, or burdens to our families. Not even puppets that need cheering up. But social beings who amongst other things have the need for love and companionship.
Now I vanish till we meet next time.
Sunday, October 08, 2006
Today I am going to talk about another important reason why we’re not special people. At least not in the way some even within professional circles refer to us. I won’t beat about the bush, we’re born to be impaired. That’s the order of things in nature and nobody can do anything about it.
I’ll track back a little. In nature you don’t usually find animals that use wheelchairs, or animals that use screen reading software. For all intents and purposes, the rule is survival of the fittest. An idea that was popularised through Charles Darwin, although not his own idea. But you get the point, unless the change benefits survival, creatures that cannot make it simply die or are killed off by predators. That’s another reason why members of a community who appear different, such as the very young or old, are usually the first to be spotted by predators.
However, although this may be part of nature, should we use this as a rule to form public policy or our society? And how far should we take it?
The eugenic movement got its ideas clear. Anyone who in any way does not conform to its ‘model’ of a human being will impact negatively the human race and the population. Solution? Either death or sterilisation.
I would calmly sip my orange juice (if only I had one) and remain impassionate at that statement. But what this social Darwinism, its correct term, is saying is that being a valid human being entails a number of physiological or intellectual criteria. And that leaves me, well, a failure on two criteria:
Whilst I don’t like failing tests, this assessment has serious implications for me as a person. In crude terms, this judgement reduces my entire life to a diagnosis based entirely on an idea of what a ‘healthy’ 24 year old should be like. Putting it like that might seem over-simplifying matters. But isn’t labelling and giving ‘objective’ names to who I am also over-simplifying matters?
Many so-called ‘professionals’ implicitly relate impairment with negative value. So we get the very flattering and positive terms like ‘dysfunctional’, ‘abnormal’, ‘deformed’ and ‘deviant’. Although I understand that to guide someone you need to name what you think may help you develop a strategy, these terms are far from neutral. By the way, these terms can be used to refer to me and some were used in my presence whilst talking about me …
So indirectly, policy discourages impairment (amongst other things) because it is perceived as undesirable. But who then does the policy that we’re talking about actually benefit? I will try to bring down the myth that making inclusion mandatory will benefit the ‘us’ or people with impairment. But first, we have to look at the policy that is built for a ‘healthy’ society, and I have to start an assessment test of course.
FOUR HOURS LATER…
Given that I used ‘health’ as my judging criteria, I can announce the people who’ve passed my test. As examiner I obviously cannot be tested. So here I go:
ADULTS BETWEEN THE AGES OF 20-50 with no history of MEDICAL CONDITIONS or who have IMPAIRMENTS or are PREGNANT have passed the test!
In other words, my results indicate that some of you reading this are not eligible to have rights because you fall out of the criteria that I have set. Sorry, please try again … better luck perhaps in another life …
I don’t mean to be overly simplistic, but in truth if you consider that babies are dependant on adults for a considerable period of time and that as a general rule adults over 50 start acquiring impairments, the reality is:
WE ARE BORN TO BE IMPAIRED …
And if it’s not an accident, or a disease, or like myself birth and medical reasons, the fact remains that impairment is something that is quite well, err…, normal really. But it’s only a fraction of our population that actually benefits from the current social structures. Unfortunately, some cling to their dream of a perfect world imbued with ideal order. And they fail to recognise that this is not only impossible but elitist. So why isn’t the truth regarding impairment as a fact in human life so eluding?
Mainly because we have institutions and bad pavements or inaccessible facilities. Added to that the idea that people with impairments or who are considered ‘unacceptable’ in the eyes of society are deemed less human.
So there! You see? The fact of human life is that we’re born to be impaired … there’s nothing essentially tragic or sad about it! It’s part of our mundane and everyday life.
Saturday, October 07, 2006
I’ve finally received my results and shall proceed to the next year of my studies. But it’ll be a tough year… but of course, I should continue blogging anyway, shouldn’t I?
I have received some email regarding my blog which is encouraging. At least people are reading!
Speaking of which, Michael McCarty has posted yesterday’s blog on his blog database… which I should say is an impressive undertaking. It contains lots of material with particular interest to blind and visually impaired persons.
FRED’S HEAD COMPANION
The site offers many resources and is managed by the American Printing House for the Blind. People may also listen to my blog there as there’s a link that might give people a rough idea of how text-to-speech works on my computer.
It’s quite exciting to realise that right at this moment millions around the world are reading this blog. Ok, I meant surfing the net… But it’s also quite an unsettling thought if you think about it. Like every invention, the internet is neutral and can be used as a weapon or as a tool. Hopefully, many of you utilise it as the latter.
I am particularly disturbed by the fact that there is no actual thing that can verify the truth of what is online. True, the net reflects our world in many ways. It gives voices to people and creates networks. But it remains essentially a world within a world.
Let’s take me writing this for an example. For all you know I may be not the person I am putting myself across as being. So there’s some trust that must go into the equation.
Think about it! A world with no obstacles, no problems of belonging, no need to struggle to get a service… etc. etc. Perfect! But then what will we be missing?
I’d miss being with the friends I have. Or just being in contact with someone else. Let’s face it, even if there are many different people on the net right now, the only way you’ll know them is from a distance or from the medium you are reading about them.
To stretch it further, aren’t scientists who check DNA of embryos just scrutinising a code that has no real grounding on the person being studied? Aren’t doing not the same thing when we lump people together as if we are understanding what it means to be that ‘other’?
Perhaps a more personal dilemma, would my impairments exist for you if I hadn’t mentioned them? I know that we say we’re living in a global village but perhaps the fact is that it may be somewhat more revealing. We may be creating a smaller world, yes, but it may be that it’s the world within us that is expanding. I guess all this puts into perspective our reality. For it should follow that the world inside that counts… so why then are certain people viewed better than others?
I shall sleep on it …
Thursday, October 05, 2006
It’s now about 3 years since I looked at myself in the mirror. But because I have now a visual impairment, I don’t know exactly how I look on the outside. I know that I have left my hair to grow long and unless I have mutated my eyes remain brown. But apart from that, I’m sure there are changes that I’m unaware of.
But what about the inside? There I notice so many changes that I sometimes really am surprised when I read things I’ve written some time ago on my computer. For instance, I know longer feel that being different or a wheelchair user with low vision is something that I shouldn’t be proud of.
After all, it’s now part of who I am. And if things should change or my eyesight improves I’m still the same person inside. But would I rather be ‘normal’? Would I wish my impairments on someone else?
These questions have troubled me since I was younger and became more pressing as I got my extra impairment. The intention people put these questions is usually to demonstrate that in reality there is an ideal human being who has all body parts in good working order and that both communication and intelligence are intact. Some years ago, I would have agreed that people who couldn’t walk were in some ways less fortunate than others. And to think that I myself had walking difficulties does make me wonder…
In truth, the reality of my impairments has served to open up a new world and was a learning experience. It still is. The sad thing is that people who do not have impairments assume that I should be really unhappy with myself for being so, well, ‘faulty’. And to confess, I do get very annoyed when these people are the first to talk on TV programmes that only aim to cause emotional reactions.
People may find it crazy if I tell them I’m proud to be disabled. Why? Because I have learned to do new things and got to explore myself in more ways than I ever thought possible. Except for the physical pain, being impaired can mean finding yourself again. For in fact, what people see on the outside is nothing more than an image.
A Deaf friend of mine recently told me how he agreed with me when I stated that other people see people with impairments as either ‘poor’ or ‘unfortunate’ creatures. None of such people considers that signing instead of talking, or wheeling around instead of walking or even hearing text instead of reading it are all different ways of expressing one’s humanity.
Would I wish my impairment on others then? I would put another question: would you have chosen to be black or white, tall or short, black or blue eyed? The answers are that this is all hypothetical stuff. I believe we should find value in who we are regardless what labels society might wish to ascribe to us. Besides, many disabled people may find themselves unhappy mainly because they are excluded from society and not because they have impairments. To me, that was a revelation to say the least.
There may come a time when my vision improves through surgery, but I feel that there is something that is inside that will continue changing and developing further. Until people realise that the life of disabled people like myself (even if it appears foreign or alien) is part of society and reality, our structures will still brand us as outcasts. True, I can no longer see my image in the mirror on the wall. But my vision of life and society is increasing and maturing.
Tuesday, October 03, 2006
I really should be upbeat today as things are improving in my life. even though my exam results have not come in yet ( so I’m a bit anxious).
LAB TO SSELL HUMAN EMBRYONIC STEM CELLS
I was reading how a lab in Scotland is selling human embryo stem cells to be used for research. The arguments brought forward is that this will ensure that research to produce cures and treatments is facilitated without the problems associated with patenting and other things usually associated with inventions. Technically, I can order a number of stem cells to do whatever I like with them.
There are of course people who argue that an embryo is a bunch of cells. I beg to differ. If it were not for that ‘bunch of cells’, all of us would not be here! And I feel that placing a price on human life is none other than a more clinical form of ‘slavery’, or even downright human experimentation.
And this is always the argument isn't it? - To build a world without disease or anything that we deem to fall out of the ‘normal’ bounds as established by the medical paradigm. But in truth, not only is the vision of a perfect world unattainable and unrealistic, but it also kills the very essence of what makes us human. Our differences and adaptability to the changing environment.
If I had to believe the many people who said I couldn’t succeed because I had an impairment, or because things had changed, I would not be here writing this. The truth is that we must look at how we are indeed creating the obstacles to the inclusion of different people and to their quality of life.
Unfortunately, economics has been the driving force behind policy and legislation over the past few years I have been following the field of policy. This trend is worrying for many reasons but mainly because it poses us with a choice between supposed material progress and human progress in the real sense. Or in other words, between an ideal society built on 'perfection' and the recognition of our life regardless of anything else. For I believe that if one life is lost for the benefit of many, we would be sacrificing far deal more than what we might have gained. If nothing, we would have lost someone who would have made a difference to other people's lives. Or the future. Or even simply changed your mood or perspective of the world.
Monday, October 02, 2006
This is not the real title of my poem but it surely grabbed your attention didn’t it? Since yesterday, I’ve been starting again my winter routine – even if it’s still autumn. And now I find that I have really changed since last year. For starters, I’m almost a year older… but some things do stay the same.
For instance, yesterday I felt I had to write a poem that is about love and desire. And of all the mythical creatures that I could equate these themes with was none other than the mythical fire bird known as the phoenix. The peculiarity of this bird is that it was thought to reproduce itself through its self-sacrifice by burning itself. And I think this is very similar to what happens to our desire for love. It burns us and is recreating us with each flame. Well, I wrote this late at night before I got to sleep. And yes, I did have a good night’s sleep if you’re wondering. I cannot get to sleep sometimes if there's unfinished business. And sometimes this means sacrificing one hour sleep… Anyway, here’s the poem:
I linger on in my silence,
As I contemplate overpowering desire.
The day is pale and my mind knows not,
What this fleeting passion will lead me to.
The heart takes over and does burn:
All past and futures…
Into mere ashes!
No time to think as life flashes like a dream,
And abruptly turns all reason.
Inverting the old order for a greater love.
And as this fiery flame rages out its energy,
Still it does not die!
For as soon as it is extinguished, a bird sets forth to fly,
To haunt me with its ever-growing longing –
But only to start its incandescent ritual. Again.
Ravaging my heart and soul leaving but ashes.
As it warms my spirit with its everlasting light.
That speaks untold desires. And changes me.
So that I burn and die repeatedly in its faceless gaze,
To be born again like a rising phoenix.
READ ABOUT THE MYTH OF THE PHOENIX
Sunday, October 01, 2006
There have been many things going on during the almost finished weekend. Most of these goings on, however, occurred in my mind. I think this is something all of us experience. Thinking of the past, of old memories or even dreaming of a future that is not yet here. And as I was surfing the net, I found a Buddhist exercise that really put things into perspective.
As I have been interested in different spiritual traditions when I was a teenager, I was surprised to get to know of this simple exercise. So here it goes…
Imagine that you knew for certain that today was your last day of life. Let’s also hope that you were lucky (or unlucky?) enough to get to know of this when you wake up. What would you do?
Would the past really matter that much any more as you know that it will soon be over?
Would the future be that important now you know it will soon end?
There are people who would go insofar as stating they would do all the things they had always wanted to do, or spend all their life savings, etc. etc. To put things into perspective, however, this day will come and death will happen. Hopefully not today or any day soon. But it will happen.
I am no stranger to death as I was very close to my rendezvous in the summer of 1999. But this is only a memory in my past and I moved on. But then again, should our past be that important? Or the future for that matter?
The answer that the Buddhist traditions would give is that for all intents and purposes, we live in the ‘now’. Although I am not advocating any following of any spiritual tradition here, it is food for thought if you consider that at the basis of every spiritual tradition there is a realisation to be aware of the present as the only moment we have real control over.
Unfortunately, for the sake of preserving some kind of ‘holy order’, the reality of the illusion of the past or future is sacrificed for the establishment of a reality that only exists in our minds.
That is why perhaps I have reacted against people who have referred to me in terms that not only reduce my humanity but also devalue me as a person. In fact, people with impairments are one group of people who ‘suffer’ from the past prejudices and are frequently promised unattainable future cures.
But many non-disabled people still believe that if one has an impairment, one cannot be happy. If you google the words ‘impairment’ or such specific terms like ‘cerebral palsy’ (one of my impairments), you’ll surely be in on for a treat if you like De Sade. There, I should be ‘afflicted by’, ‘suffering from’ or even ‘plagued by’ cerebral palsy. And medical texts are full of such allegedly objective terminology…
I’m not saying that my impairment is totally pain-free. But I’m not going through daily pain or torment. I mean I have a life! And I also made a personal decision not to spend my waking hours doing physiotherapy or even ‘art’ therapy. I work, study, and try to hang out with people.
But it’s not just a matter of being deemed a subject that worries me but it’s also when I’m perceived as an object. Here we go into the other extreme of reading my life as if it was a holy pilgrimage or my image as representing a means for other’s salvation. I shudder to wheel into a hall full of religious devotees for the simple reason that I’m something (yes something) that ‘inspires’ them and gives a purpose to their work. I don’t mean to put down any religion here but being talked about as a ‘weaker member’ of the community or as a ‘less fortunate’ person doesn’t make me feel welcome in the least. and that is if you also consider that people from the old school still regard people with impairments as ‘angels’ sends shivers down my spine.
I have to tackle all this over and over again as it’s like a silent sentence that gets repeated in my present life. But undeniably, the fact that many less fortunate people miss out is that this is who I am now. If society wishes to dream on a time when there are no more people with impairments, it’s either kidding itself or preparing for my execution.
For it is now that we can change our country or our world. The future is but not there yet and the past is but a closed book we may refer to for guidance. But yet, they are the only foundations we build upon.
Now I can really go and rest in peace. Well, at least till another day starts …